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Bethleham Myopsy

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  • March 31, 2021 at 8:22 pm #193563
    Bethleham Myopsy

    My grandson was born on 11 January 2021. 9 weeks premature, I recently found out that he has this condition. I want to be as supportive as I possibly can to my son and his partner but I do not know mocg about the illness or the kind of care my gtandson will require. This is their first child as well. Any information would be greatly appreciated

    TeamFrankie
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    Joined: 31/03/2021
    April 1, 2021 at 1:50 am #193564
    Reply To: Bethleham Myopsy

    I hadn’t heard of Bethlem Myopathy before, there are so many types of Muscular Dystrophy.

    With any luck the wee fella will be as lightly affected as I am with Becker MD. I was diagnosed at 28, and only started using a walking stick last year. I will be 46 in June.

    ranald
    Participant
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    Joined: 05/09/2010
    April 1, 2021 at 12:43 pm #193571
    Reply To: Bethleham Myopsy

    Hello and welcome. As Ranald says there are so many types of MD so it is wonderful to know that your grandson has been diagnosed so early in his life. Clearly there is still a long way to go. I hope you have seen this

    https://oldsite.musculardystrophyuk.org/about-muscle-wasting-conditions/congenital-muscular-dystrophy-cmd/bethlem-myopathy-factsheet/

    It gives a really good understanding of this condition, and suggest what may happen in the future. I do say may, quite deliberately. There is no hard and fast guarantee that what you read will happen, and happen to a particular level of problem or not. We are all individuals and the condition will affect your grandson in a way that is particular to him. Having the diagnosis at such an early age means that getting the help he needs will also come early and thus be of more help. There is much more to come of course, and what you can do specifically will be shown in time. I am sure you will offer as much support as you can to your son and partner. But also please remember that things are constantly changing and new treatments are sure to develop in your grandson’s lifetime.
    Please read the link and others like

    https://rarediseases.info.nih.gov/diseases/873/bethlem-myopathy

    and then please feel free to come back with any questions you may have. We are here to help if we can.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
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    Joined: 02/11/2015
    April 5, 2021 at 9:55 pm #193599
    Reply To: Bethleham Myopsy

    Hi TeamFrankie :welcome:

    I have Ullrich CMD which is related to Bethlem Myopathy. They are both known as Collagen VI disorders and form a spectrum of severity with Bethlem at the milder end of it.

    I am 42 and there have been many advancements in both knowledge and technology in my lifetime. I live in my own home with the support of PAs (carers). I went to university, have travelled, worked and achieved what I’ve set out to albeit in a unconventional way sometimes!

    Diagnosis is daunting and there can be a lot to process. You need to give yourself time to do that and when you are ready, there are many places to go for support. This forum of course and others for example, there is a strong Facebook support group for Collagen VI disorders made up of people with the condition and their parents/relatives. Shared experience can be very useful and we all help each other.

    Please ask questions if you have any. All the best to you and your family.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
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    Joined: 05/03/2015
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